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tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/6/2010 1:01 AM (GMT -7)   
.

Post Edited (tsitodawg) : 11/13/2011 3:29:14 AM (GMT-7)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/6/2010 1:06 AM (GMT -7)   
Interesting! Thanks for sharing that.

I agree with you that most doctors really have no idea what it's like to live with this illness. I wish more of them would understand that sick really does mean very sick, and that "remission" doesn't necessarily mean "well" or, heaven forbid, "great".
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/6/2010 7:21 AM (GMT -7)   
very interesting...thanks for sharing... though I will have to say that I know the dangers of prednisone.. but what if Entocort makes you worse? Twice now that happened...I wish there was a third option.

look forward to future sharings...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/6/2010 7:39 AM (GMT -7)   
Thanks was very interesting Tsitodawg. I have such an awesome relationship with my GI, we talk much like you and your wifes cousin did all the time. I also agree that as a 35 year Crohns sufferer I am much more knowledgable about medical issues. I think that comes from being a person who asks so many questions anytime I am with a doc. For example, when I was in the hospital if they were giving me a med, I would ask what it was, the dosage, why it was being given etc. I have always been like that, even when going thru pregnancies or other medical procedures. I have family members that come and ask me medical questions. I don't give medical advice or anything like that, but generally I have had some experience with a med or test or treatment, and just tell my experience or thoughts on it. I was also a nurse for generic patients in my first career, so do have a tiny bit of medical experience. But the main thing is after having this disease so long you really do learn alot about the body and meds.

I see my GI quarterly and he and I usually spend at least 45 minutes talking most times. The first 15 is usually about my Crohns, but then the rest is picking eachothers brain. I have to say my GI's scopes skills suck, but I love just about everything else about him. Thanks for sharing.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/6/2010 3:59 PM (GMT -7)   
It's wonderful to find a dr that talks to you as if you know what you're talking about. I'm glad to say that my GI does talk to me knowing that I have a medical background, and she respects that I know more about myself and what symptoms typically mean when I have them.

My GI also is very against pred unless there are no other options, which I really like, since I don't like taking it unless it's absolutely necessary.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Pmkrier
Regular Member


Date Joined Apr 2010
Total Posts : 69
   Posted 8/6/2010 5:09 PM (GMT -7)   
Very interesting! Thanks for sharing!
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently on: Monthly B-12 injections, 6MP, Calcium, Multi-Vitamin, Vitamin D, Prilosec, just starting Humira
Surgery scheduled: August 19 2010 - small bowel resection in TI

sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 8/6/2010 9:59 PM (GMT -7)   
thanks for sharing that! What county does he practice in? If he's close by I might visit him and see if I like him more than my current GI. :)
Diagnosed with UC in February 2009.
Diagnosed with Crohn's December 2009.
Flaring since October 2008 with occasional spikes in symptoms
Possible Rheumatoid Arthritis
Osteopenia

Medication: Imuran 75 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine, Calcium w/vit D

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/7/2010 4:50 AM (GMT -7)   
Ahhhhh, tsitodawg, IF ONLY I could have the chance to chat w/each of my specialists as you had w/your wife's cousin!!!! It would be such a refreshing "miracle" I really would be happy if it could happen on even only one occasion.

And, Nanners, how fortunate you are w/your gastro! My experience and the experience of others in this area is that our gastros are in the office only one day a week, the other 3 days are spent doing procedures so you NEVER get anywhere near that much time w/them. Usually not even on your initial consultation w/them for which you are billed a full hour and seldom have 30 minutes w/them.

The latter really bothers me as doctors just do NOT seem to hear - or don't know how to listen well. My family doctor always gives me a copy of the dictation from my specialists that they send to him. And always there are mistakes. Always. And I'm not talking typos.

The best solution to this I encountered w/a specialist that I absolutely detested and never saw again - but admired and respected his manner of handling his dictation. He carried a small hand held tape recorder in his lab coat breast pocket (he's one of those who likes to wear his white "lab coat" at the office). Then he takes up a bit of your consultation time at the end of your consult by dictating into that tape recorder. That gives you the opportunity to correct any mistakes (which I did) before the dictation is transcribed.

Just a short time ago I had an initial consult w/a new gastro. Our first meeting was in Endoscopy for an Upper Endo. After the UE he suggested I take Dexilant and to stop by his office and pick up some samples. The written instructions I was given before leaving the Endosocpy facility was to take the Dexlant once a day. Guess what?

When I got a copy of his dictation from my family doctor after the initial consult, he states that I am taking Dexilant once a day as I reported on my history - BUT HE goes on to say that he told me to take Dexilant EVERY OTHER DAY! I was so very tempted - and still might - to send him a xerox copy of my WRITTEN discharge instructions!!! There were a couple of other mistakes as well but the above illustrates my point most clearly.

I've often wished I had the nerve to ask that I be allowed to let a tape recorder run during my consults w/all my doctors!! And that they would be agreeable w/o feeling threatened, of course.
My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 8/7/2010 5:55:12 AM (GMT-6)


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 8/7/2010 8:24 AM (GMT -7)   
Sorry I didn't even think about that!! Oops :( How do you send PM's? I haven't been able to figure that out on here yet.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's December 2009.
Flaring since October 2008 with occasional spikes in symptoms
Possible Rheumatoid Arthritis
Osteopenia

Medication: Imuran 75 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine, Calcium w/vit D

Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 8/7/2010 4:41 PM (GMT -7)   
Hi,
While I agree with both you and Doc that prednisone is basically the devil (It seriously sucks big time) it DOES have it's place, and I think for him to suggest otherwise is irresponsible (or ignorant) .
From my understanding, budesonide or Entocort, is only effective on crohn's in the ileum and the ascending colon. So if you have crohn's farther along in the colon, it's of no help. I actually asked for it specifically about 10 yrs ago after hearing about other Crohnnies having good success with it, my gastro said it would not work for my crohn's as it just at the last 6 or 8 inches of my colon..

But when I flare, I flare hard and fast and remi and humira have not worked. Although I dread being on pred.. it has saved me a few times, and its results can be felt almost immediately (within 48h usually).

I agree that it should almost never be used as a longer term therapy unless the person is extremely desperate and the MANY negatives are outweighed by the positive. but usually a course of 6-8 weeks will pull most people out of a flare.
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 8/7/2010 11:56 PM (GMT -7)   
That's awesome that you got to talk to a GI who talked back and treated you like a human being.

K...here's where I confess...I don't have a GI. I TRIED but I kind of gave up on them. Actually after I was sick through March-May I was treated by the same group of gastros who DIAGNOSED me as Crohns and every blasted time one of them came to see me, they'd ask how I KNEW I had Crohns. And I'd blink and want to scream 'cause I got a new gastro every day, but I wouldn't...and just state that they diagnosed me Feb. of 2007. And this is why I asked my doc to set me up with a different group of gastros. All of the ones in the area I live in are part of this "group". If none of them are willing to find out that I was previously treated by something like 5 different docs in this group for 5 different days then I don't want to be apart of it.


However, I'm being a good Crohnie and I've set up an appointment with a doc at KUMed and here's hoping.

Why did I bring all that up? Well, because it crossed my mind that I'm TIRED of all of these GIs. It honestly seems like they don't care. And that they are mentally what they treat physically (hehehe, that's a nice way of saying their erhum, a--holes). So maybe the road to a good GI is to find the ones who aren't so blasted gung-ho to make you take the last tier of meds before we try all the other tiers of meds first.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin

Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 8/8/2010 12:15 AM (GMT -7)   
Dawg- yes if the patients' symptoms can be controlled without prednisone, so much the better..maybe I took the wrong fwwl from your original post that Doc wouldn't consider giving pred under any circumstances.

Joie- that would be so frustrating! Time to laminate a copy of your colonoscopy findings and bring it along to any appt's. Although your GI's work as a team, is there any way to request a specific Doctor? I had a longtime doc about 10 yrs and then he retired and I have the best gastro ever. But to have to recap everything would get old REAL fast..if you have a longtime gastro, you just pick up where you left off.
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/8/2010 1:59 PM (GMT -7)   
I guess I am very lucky with my GI and other docs...my GI especially is very much like you describe Tsitodawg...and he DOES know what is like to suffer from illness...he doesn't have crohn's but he suffers from another autoimmune type disorder...and we talk a lot...it might also be that I am a different type of case (atypical crohns...and I have PSC)...but we talk about latest treatments, those that are in clinical trials...lastest research...and we've even discussed hookworm therapy...
"The earth laughs in flowers"
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